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Spoonies?!

I was just curious is anyone else suffers from Chronic Illnesses and how do you cope after surgery? If the pain and fatigue don't go away after weeks, what do you do? I also was curious if there are any Spoonies out there?

If Spoonie refers to fibromyalgia, I'm a Spoonie then! Have seen it mentioned in other sites. As jessWoo76, I try to pace myself, accept not having everything done when I or other want it done but when my body can handle doing Xjob/chore/duty. I've learned to say 'no'. I try not to commit myself too much. Just this week I had to cancel three days worth of appointments/commitments because I got a flare up where I just horrible and had to stay home and lay low. Very frustrating to do. I'm trying to get out to walk even for a short time because I know it's good for me not really cause I want to. And I take regular meds and as-needed pain meds and muscle relaxers. Not crazy about it but it's come down to quality of life for me. It ain't easy!And make sure your expectations are realistic for your recovery from surgery. Remind yourself that you will probable heal somewhat slower than the next person without chronic health issues. Be nice to yourself. Be good to yourself.

Don't know about the "Spoonie" thing but I know about surgery & chronic illness/pain. When I have surgery I plan to be down (on the couch) for at least 4 days, usually a week. All of those close to me know this & actually do try to help me rest. With me, the hope of the surgery is to end pain (I have issues with hernias) & usually it does work. It doesn't, however, end the other chronic pain.

I am still learning how to pace myself & figuring out how much is too much. My suggestion is to listen to your body & when pain starts to spike, rest, use a heating/ice pad, pain meds as needed. Everyone's body is different so what works for me might not help you, but I hope that maybe how I have given you some ideas.

It's not specific to any illness or chronic disorder. It's mostly based off the idea of Energy in relation to the amout of "spoons" you posses. Healthy people have unlimited spoons, but people who suffer with less than the best health don't have unlimited spoons. It's pretty much a lovely community of people who understand what you go through and relate.

Ok maybe its the fibro fog, but I'm not comprehending just what spoonie(s) stands for. A little elementary help here please!! I should mention I'm the one with the recent "dementia" DX, and on that note I had a 2 hr psych eval this am, flunking or timing out on about 1/3-1/2 of the questions/puzzles/problem solving. I'm not feeling very confident on the exam results...lol 😲 I definitely got a throbbing headache in the exam process.

There are also "anti-spoonies" out there. They're basically people who have either completely missed the point of the Spoon Theory or who just aren't empathetic/sympathetic. But we here get it, and everyone here is very nice and supportive.

Hmm I follow a few spoonie instagrams and tumblr pages, but I totally didn't know there were anti-Spoonies! That's so sad~ ;3; it's frustrating when people don't understand or believe what you are going through!

Hmm I follow a few spoonie instagrams and tumblr pages, but I totally didn't know there were anti-Spoonies! That's so sad~ ;3; it's frustrating when people don't understand or believe what you are going through!

Hmm I follow a few spoonie instagrams and tumblr pages, but I totally didn't know there were anti-Spoonies! That's so sad~ ;3; it's frustrating when people don't understand or believe what you are going through!

I had never heard of the Spoon Theory, and after reading the story, I have nothing but thanks for you!! It's the best way I've ever heard of to explain chronic pain issues, or any energy (physical or mental) sapping disease. Thanks again!

I love the spoon theory, long time spoon activist here haha. It is such a great way of explaining things that most people understand. If you don't mind me asking what instagram and tumblrs do you follow? Also Some anti-spoonies just don't understand the theory and one you explain they support it. Other are just discriminatory a**holes

It's equating your energy levels to definable objects so others can understand that once your energy is gone it's gone. normal healthy people don't understand that being in pain takes up a lot of energy and that we have to prioritize things and make choices that they would normally not have to. Example: make supper or shower is a choice most don't have to make, healthy people do both without thinking about it, we have to decide if we have energy for both and if it's a maybe yes what the consequences of doing so would be later.

Its a relative thing. Some days you will have more energy (spoons) then others. Best way to figure out 'spoons' is to start tracking everything and energy before and after. The goal is to always end the day with energy. If you track it then you will know how much an activity takes and then later you will be better able to pace and not do too much.

A spoonie is someone living with a chronic illness. It mostly refers to physical chronic illnesses, though it has been known to be a helpful term for those with chronic mental illness as well.

It originates from Christine Miserandino's Spoon Theory story, in which she explains what it's like to live with chronic illness to a friend, and uses a handful of spoons to demonstrate. For example, daily activities that healthy people tend not to think about take tolls on people with chronic illness. You start the day with a certain number of spoons, and play your day around not running out. Socializing might cost spoons, using the stairs might cost spoons, lifting things might cost spoons, etc.Skylar: It's a low spoons day today, I don't think I'll go out. Fallon: You're a spoonie? I didn't know. Well, I hope you feel better tomorrow. Can I do anything for you?

Definitely a spoonie. Fibromyalgia, SLE, Sjogren's, OA, connective joint tissue disorder.... Of course anxiety and depression. I've been reading these messages for a long while, tried to post a few times but my insecurities got the best of me and I have just been reading...and I find them very inspiring. Just to talk to someone who understands! But when you bring up spoons???? Then, as a spoonie, I find I must join in!! When I first read the Spoon Theory I cried. There is another one I like.. It is called "Love Letters to the Normals"... From a person with chronic pain to the people without chronic pain. It all makes me feel not so alone with my pain. NOBODY I know understands, really.... Hope I can be part of this.

Welcome Justbcuzz to our little family community of chronic pain. Don't be afraid to talk here we are all here to listen to what you need. You can rant and rave all you want we have all been there ourselves. You won't be judged for anything. I am also a Spoonie.

I emailed my father an article on spoons thinking if it was in a PowerPoint production he would maybe understand. Not. How do you explain to an 88-year-old man who jogs four times a week, yes it's remarkable about him and we all have to tell him so constantly but I told him I was suicidally depressed a year ago when I had to move here and I understand that you can't see it but he gets angry at me then goes to his girlfriends and I lie on the bed all day and think about dying. I came from the PT's today and she agreed that it is a lot--it is so overwhelming it's not that I can't make friends that I am unable to get anywhere right now and have no energy and can't drive I'm stuck in this house and really don't know what to do.

I'm not a sponnie but I deal with chronic pain all over my body. 3 surgeries in the year. Recovering from one now. Wanted to die so bad. Actually went to sign up for behavorial pain management and was admitted to a psych ward until the surgery. Headaches from neck and spine was unbearable. Could deal with everything else but that. I was at a pain level of 8 with meds all day. Spinal fusion done. But. Afraid that it didn't fix the head issue. They are not as bad at this point but I am taking more pain meds than ever before. So strong will have to be weaned off of them.

CHWalt, I'm sorry you're having all this at once. I hope you recuperate from this last surgery sooner than expected.

I have headaches from my spine, and thoracic and lumbosacral pain. I had epidural nerve blocks from 2012 to 2014, and did real well until this year. Have you ever had ESI's? I've had real good results with them. Some people do and some don't.

Do you have any non-med ways to try and help your pain? I have a Tens Unit, use a microwave shoulder wrap, and use voltaren gel. I'm seriously thinking of buying a teeter hang ups inversion table to stretch my spine. I say this because it hurts real bad if I lean back or sit straight up. But if I lean down and touch the floor my back feels much better. I'll be praying for you to get more relief from your pain soon! Hope you have a good night's sleep. 🙏🌼

Thoroughly a spoonie here. Spoonie4life! Here's a run down of my list: fibromyalgia, endometriosis, interstitial cystitis, chronic migraines, IBS, PTSD, Major depressive disorder, ADHD, and some off the charts anxiety every now and then. ;) Most everything had an onset at the age of 14 although some struck as early as 5th grade. So been living the spoonie life a while now, but just learned the term a half year back.

@marsemouse I have been where you are, feeling so isolated. I have gone so far as to have attempted suicide and ended up under 5150 a couple of times. I DO NOT recommended it to or for anyone and not just for the obvious reasons, yeah you've heard all the cliches before, but I truly wish I could hold your hand right now look deep into your eyes and let you know that you are worth it! You are worth living for. The agonizing pains we feel that send us reeling and tearing at our hair may try to destroy us but they do not control us! Because we can alter our breath and breathe through the pain. We can reach out to a fellow spoonie and help ease their burden for a milisecond, we can push that pain away deep in the back of our minds where we forget its there while we instead enjoy a moment of beauty. Your life is beautiful and I will gladly help you carry your pain if needed. Take heart. ♡

The plan I think they have for me after I recover from this is to admit me into the program that I was trying to get into before being admitted in to a psych ward (behavioral pain management).Then sending me somewhere for 4 weeks to try water, yoga and those sorts of things. At this point I just wish I could sleep until that time. Thank you for your replies. I visit people that are in this position for a living. Maybe this is God's way of letting me actually feel what they are feeling.

Marsemouse, you are very welcome and I mean it, I am here if you need me. You are never alone. I am so sorry you are going through a situation where you are finding so little understanding. Sending you gentle hugs, light, and ♡.

I am a spoonie, I have a Syrinx inside of mu spinal cord it is called Syringomyelia, it caused nerve and muscle deterioration, osteoarthritis, Fibromyalgia, disk herniated and uprooted nerve,Spondylosis, anteriordiskectomy on C5,6,7, my neck was better from 2005 until 2013 and I have started having problems and they are getting worse I have a Syrinx from CS7- T12-L1 it is causing so many problems with my arms and legs, I need to try and get my Neuro to have a shunt placed to drain the fluid out of my spinal cord. I am so afraid I am going to wind up in a wheelchair with in the next 2 years if not sooner.

Hi KateGibson. Seems like everyone with fibromyalgia has a few overlapping Issues.. I have fibromyalgia, lupus, Sjogren's, osteoarthritis, PTSD , adult ADHD, thyroid, anxiety, depression, etc. it's hard to tell sometimes what syndrome is causing what pain.... You have found a great community with lots of understanding, love, kindness and feel free to vent anytime. Have you had fibromyalgia for long before being diagnosed?

Spoonie here too. Unfortunately pain has become a lifestyle for me. I had 2 different surgeries on my feet. Both went well; you just need to take very good care of yourself during recovery. Possibly check into some suppliments, I take magniesum glyconate 1000 mg at night. Our bodies are low on magniesum. Everyone has a different strategy for coping. I will say that purchasing products expecially made for fibro is usually a waste of money. Sleep and stress reduction will do you more good than most meds. If you can figure out what vitamins and minerals you are low on taking those should help. I personally am very aenimic and my thyroid is very bad. Autoimmune diseases tend to show up together you should talk to your Dr about tests.Good luck ((hug))

Hi Heidi...fellow spoonie! Sorry to hear about your feet. Hope you recover quickly. I also take magnesiu. I have dreadfull sleep problems and have tried everything I know of. Its feast or famon. Either cant sleep or sleep too much. But when I do sleep I definitely feel better. I'm vitamin D deficient and calcium deficient so supplements are a must. Take care of yourself!

Hiya. I'm a spoonie. I suffer with Endometriosis and in constant chronic pain. After my surgeries it takes me quite a few weeks to recover. Planning and freezing meals beforehand can help you after surgery so you don't have to make all the meals. Get plenty of films, magazines etc ready. Have someone there to help you over the first couple of days. Also love the spoon theory! I always use it to refer friends and family to.

Welcome, JustBcuzz, I'm also a relative newcomer here, but everyone is so kind that it didn't take me long to fit right in!

I only recently discovered the spoon theory, and I have to say that I've never heard any other method of explaining chronic pain and fatigue that is as effective. How else to explain my limitations to someone who can't believe that all I really need is a nap so I can feel better?

I wish a nap would make everything better!

Question for the Spoonies in the community: How do you learn how many spoons you have each day? And how do you determine how many spoons each daily activity costs you? I'm still learning!

Hi Gracie.Honestly trial and error are the only ways to figure out 'spoons'.It is probably a good idea to start an activity tracking journal. When you wake up wrote down how you feel. Write out each activity and the energy you had before, how long you did each task, how you felt during, and the energy levels after. Every day is different and we can only ever guess and hope we are close. I should mention that i haven't actually done the activity log even though it was recommended to me. It seems like an awful lot of work.I do try to listen to my body and i try to rest when it tells me i need to. I hope you can figure it out

Hi there! It's a way to explain to others how limited an amount of energy we have each day.

Say you wake up one morning with quite a bit of energy. Maybe you decide that today you have twelve spoons. (The spoons represent your energy level.) But just getting out of bed is harder than you expected, and it costs you one spoon. Now you're down to eleven. Maybe showering costs you a spoon, and getting ready costs you another. A phone call to a friend could cost you two or three spoons, leaving you much less for the rest of the day. You could borrow against tomorrow's spoons, but you likely will regret doing that.

Does that make sense? Anything that costs you energy and focus is like costing you spoons. Maybe cooking a meal costs you one spoon; running to the grocery could cost you three or four spoons; some days, even pulling on clothes costs one spoon.

And it's an easy way to explain to others, who don't always believe that we're sick if we don't show outward signs of sickness. The spoon theory gives others in your life, as well as you, something tangible to explain your limitations.

No problem, I'm new to it, too. And I haven't figured out yet how to get to the end of the day with spoons left over, or even to break even, either. It sort of takes time to figure out your own limitations and what each activity costs you in "spoons." And some days it changes. Today, I woke with maybe eight spoons because I overdid it yesterday. It all depends.

With the spoon theory, I've explained to friends how I feel on really bad days, and one of them started actually thinking the way I do about saving more for later in case something goes wrong. Them I got to explain why confluence is so hard. I have to dress up, then work with my group for several hours. Then we present to a panel of 4 people (teachers and community). It's like a cooking competition in some ways. Here's what you did right. Here's what you did wrong. Now go fix it!I'll need extra spoons when a group member doesn't show up, and I have to do their part of the script. I'll need an extra spin when the rest of my group goes and buys a fish. I'll just sit and wonder why, but keep working. Hmmm...I wonder if I'll make it through confluence this year.

My spoons are depleted for today and I used some from tomorrow. I spent nearly all day on my feet cooking a full meal for our neighbor's grieving family. My hubby got home to help me at 2:30 so I at least had some break then. We took the food to them and they were so appreciative. Bless her heart, our widowed friend looked completely exhausted. She hugged us and said she'd see us at the funeral. Now I'm laying in my bed with every fiber screaming at me in pain. But it was worth it, and I can rest tomorrow. I pray she gets some sleep. 🙏🌼

Thank you Gracie! I was real stiff when I woke up so I laid on my back and stretched my legs and arms gently. Then I took a shower. I just had to buy a new shower head, and its so relaxing, like standing in a sudden rain. 🙏🌼

So glad you're feeling better. Do you, by any chance, write poetry? Sometimes writing a poem helps me process after a long day or week, and your last line about getting caught in a sudden rain was positively lovely!

Hey there! I am a spoonie, I have neurofibromatosis,hypothyroidism,secondary adrenal insufficiency,GERD(acid reflux),scoliosis,hip dysplaysia,chronic nausea(just feeling nauseous but not anymore thanks to medicine!),I have gallstones and I am constantly short of breath.

I have fibromyalgia, thyroid disorder and chronic abdominal pain caused by sphincter of oddi dysfunction. Pain has been 6-7 since June and can't seem to get a handle on it. My spoons are used up by 3 pm and I have to work and am in college now. It is exhausting! I feel for all of you. I'm not sure why this is happening to me, but I'm really fed up with it day in and out.

Spoonies are not just people with fibromyalgia, but any person that suffers with chronic pain, or suffers but doesn't really look sick. It's a great theory for explaining or teaching someone that's healthy, all the thugs they do without giving it a second thought. I am constantly wishing I had more spoons. I, far too often, have use up all my spoons just by the time noon rolls around. :(

Hi Spoonies - yes the spoons theory is a really great way to embody the fatigue situation. Has helped me learn about pacing my self and helped me explain to others how I have to take life at a pace and why. I have EDS- Hypermobility type so I can have pain in many or a few joints. My neck has joined the pain party nowadays and it's pretty much game over when that goes bad and flares up. Although I'm getting better at rationing those spoons, every now and then I can't help push it a bit too much into my spoon overdraft and today being a payback! Distraction is my weapon of choice against the pain today and my art is keeping me afloat these days. I get so absorbed in painting sometimes I forget about the pain cometely. I would recommend it highly to anyone. Even if you're not creative, get a colouring book and some felt tip pens- pretty colours really can cheer things up a bit, as can a bit of music. External stimulation is a good distraction from the internal situation. Too much thinking about it only makes it worse. Oh and my cats I'll add can take some credit for making things better. 🐅🐈. Animals can sense when you're in pain. I had to let go of my career as a sound engineer last year after struggling for the past 4 in pain. So I decided to indulge myself in what I loved doing and decided to be an artist. Sometimes people even buy my paintings which in a funny sort of a way makes the pain a blessing so there is a silver lining to it all.

I'm definitely a spoonie! Hypermobility Syndrome which has caused other lovely issues. Hlf the time I feel as if the lack of spoons is worse than the pain, it's easier to hide pain from thers I guess. Does anyone else feel like this? I think it's because I've always wanted to make other people happy and I know me not being able to enjoy things upsets them so I can hide more pain if I and mire spoons. Sorry if that makes no sense

I have fibro,ostio,buldging disc,hip burstitis.I have had surgery recently on knee wont bore u with in's & out's but you need to b "Patient" with ur self i found that real tough & frustrating relying on others. Onething tho obviously depending what surgery ur having my surgeon said this will either make it a lot better or worse so i was prepared in case!! In my case in op he said oh its a lot worse than they 1st thought, PACE ur self if it hurts "Stop"! Take things day by day i had good & bad daya then a flare post op ( 2 weeks ) try & eat as healthy as u can plenty of fruit & greek or natural yogart helped me & fluids & lots of it!! Im lucky as my daughter luces with me but i find if u can pre-cook & freeze meals it saves a lot of hassle be kind to ue self too i was always telling myself off etc until my physio said it as it is health comes 1st hope ur op goes as smoothly as possible x

I cant. I am the only income in my family. I have to work. Then I have to go home and do all the work there. I just have to push myself through. Go in the bathroom and cry or in the shower. Pretend im ok......

I wonder if any one have any issues with their eyes with this fibo. Maybe it's the meds I take. Had eye text last week. My pressure was fine. Getting macular degeneration and a cataract on top of the Glaucoma Dr said my eyes are dry. It's a pain. For my spoon ie I have my days just have to slow down. Take a break . Then just finish what I was doing. Try to get my sleep and it eat good.

Good morning fellow spoonies. I have fibromyalgia and myofascial pain syndrome. One of my biggest fears is surgery. If it were me having one done, I would make sure all those close to me are prepared for what I know it take would for my recovery. Plan for much rest, but still be sure to move your body, I suspect it would help recovery tremendously, rather than just staying in bed. Pace yourself accordingly, your body will let you know. Be realistic in the way of how long recovery will take - people with chronic pain/illness need to expect a longer recovery period. Stay strong spoonies. *gentle hugs*

I've had to have plenty of surgeries and procedures (which may as well be surgery) and my doctor always warns me that it will be a long road to recovery. Having these chronic illnesses (especially fibromyalgia & CFS) makes the recovery time a lot longer than it would be for a normie.

Pace yourself, be kind to yourself and don't be afraid to say no. Listen to the whispers of your body, it won't lead you wrong. One thing that i have found helps after a week or two depending upon the surgery, is to start moving. Even if it is just small stretches done while in bed. And when you feel strong enough to stand up for a few minutes, choose an amount of time that you can spend doing a chore. For me, depending on the severity of my surgery and if I have forgotten to pace myself and be kind to myself, I choose between 5,10,15 minute intervals of chores.

And i also remind myself that it is okay that the dishes aren't done or the laundry isn't caught up because if I push myself too far out well be months before anything gets done.

Hope you find some middle ground that helps you through this. I think anyone with chronic diseases has a harder time recovering from surgeries.

Wow! So glad I read all these posts! My hip replacement surgery was in May 2015 and I am still on a fentanyl patch and percusset 10/325 for breakthrough pain. I hope I am a temporary spoonie. The whole concept about spoons is very comforting! I also got very upset when people say "You look great!" I stated on my FaceBook, that one should ask a person how they are doing rather than make statements diagnosing them by their appearance. I just learned that part of my pain was caused by scar adhesions and nerves being entangled in this fibrous mess. Any time you have surgery, scar adhesions may form. A solution is to exercise the area and once the doctor says the scar is not open and solid on the top, massage by your physical therapist can break up the adhesions. This must be written on your PT prescription or else they will not do it. I also found some Chinese medicine that has camphor and other herbs helpful. Why is this something that is not discussed before you have surgery or after? Well at least I can pass it on. Thanks to the lady who talked about art being a vacation from the pain. So true for me! Now I am scheduling more social events with a friend for something to look forward to at the end of the week. I am going to give my PT one more try and if she does not give me a deep massage for at least 5 minutes, I will find a new one. Thanks to all who contribute. May God lighten your yoke and bless you with many spoons tomorrow.

I love the spoon theory. Reading it for the first time I realised I wasn't lazy, useless and alone. I finally saw that there were others in the same position as me and it gave me a way to try and explain how my life is now where one day I can seem to be fairly 'normal' but forcing myself to do more than I should makes me crash and everything becomes a major struggle for several days afterwards.